Pa. Boy Helps Spread Word On Autism Langhorne Youth Joins Rep. Jim Greenwood In Making Case For More Research Funds.

June 25, 1998|by PETE LEFFLER, The Morning Call

Nine-year-old David Grygo has autism, a neurological disorder that often prevents children from communicating.

Grygo, of Langhorne, was diagnosed as a toddler. Since the age of 2-1/2, he has had professional help dealing with the peculiar barriers in his brain. As a result, Grygo speaks, reads and functions at the grade level for his age, according to his mother, Ambry Ward.

Wednesday, he put those skills on display by unexpectedly raising his hand and asking a question at a Capitol Hill news conference attended by a Hollywood star, members of Congress and a dozen families struggling to cope with an affliction they say government researchers have long overlooked.

"What's a news conference?" Grygo asked U.S. Sen. Slade Gorton, R-Wash. It's an opportunity, Gorton responded, to spread the word about autism and the need for more scientific study into genetic clues for a cure.

Gorton and U.S. Rep. Jim Greenwood, R-8th District, are co-sponsors of legislation seeking up to $40 million next year and $200 million over five years from federal taxpayers for autism research. Today the government spends $12.5 million directly on the problem, which Greenwood said occurs more frequently than Down syndrome, childhood cancer or cystic fibrosis.

The Greenwood and Gorton bills ask Congress to authorize the program. U.S. Sen. Arlen Specter, R-Pa., chairs a Senate subcommittee that will help decide whether to spend the money.

Already in the U.S. House, Republican plans to boost medical and scientific research are under fire from supporters of programs facing offsetting cuts. One provides home-heating assistance to the elderly poor in Pennsylvania.

To be distributed by the National Institutes of Health, the money would pay for research and create five regional collaborative study sites, probably at medical universities. The facilities would be linked by a network so results could be shared rapidly, an approach used successfully to fight childhood leukemia.

Money also would go toward spreading information about autism to doctors and the public with a goal toward earlier intervention. Symptoms can vary greatly, but often start to appear after a child's first birthday, parents at Wednesday's event said.

Film producer Jonathan Shestack of Los Angeles described how autism consumed his son Dov four years ago. As he neared 1, Dov would stare off into space more and more. Then he stopped responding to spoken words, even greetings from his father as he returned home from a day of work.

"I saw our most precious gift disappear in a matter of months," said Shestack, now vice president and treasurer of Cure Autism Now (CAN), a Los Angeles group that raises money for research and serves as a clearinghouse for families facing autism. Its Web site is http://www.canfoundation.org

"We have to love our children for who they are," said Shestack, who produced the Harrison Ford thriller "Air Force One."

"But we also have to want more for them."

Autistic symptoms can include problems communicating, mental retardation, difficulty interacting with other people, even self-injury, experts say. A tiny fraction of autistic people exhibit extraordinary talents like those portrayed by Dustin Hoffman in the film "Rain Man."

Actor Anthony Edwards, better known as Dr. Green on the television series "ER," said he joined the CAN board because he liked its direct approach and focus on spreading the word about autism. One of his cousin's children has autism, he said.

"Autism is a developmental disorder that cuts off communication," Edwards said. "What a wonderful way to combat that -- with communication."

Gorton said he got involved with CAN partly because his grandchild is one of the nation's 400,000 autistic children. Greenwood said no one in his family has the disorder, but as a former child-care caseworker in Bucks County, he worked closely with autistic children.

Greenwood worked then with Ward and her husband, Gerald J. Grygo. Joyce Harding of Warrington and her son John Harding, 12, also made the trip to Washington. As his mother delivered her remarks, the boy sat with his fingers tightly crossed.

Harding said her son wasn't diagnosed as autistic until age 5 but had received developmental help since turning 1.